Friday, April 30, 2010

YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video

YouTube - M.E. / Chronic Fatigue Syndrome - Sleepydust Video

Please use this to spread understanding of our plight



Please follow my example and sign/ donate (not obligitory) to support Dr Myhill

We the undersigned wish to register our strong objections to the GMC (General Medical Council) over the witch hunt campaign to discredit Dr Sarah Myhill. This is the 6th time that Dr Myhill has been subjected to such a hearing and enough is enough! This petition will be used to directly support Dr Myhill in her attempts to clear her name. (Please be civil and respectful in your contribution without making personal comments about any other individuals. Anything of this nature serves no useful purpose and will be deleted by the petition sponsor

BioMed Central | Full text | Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

BioMed Central | Full text | Practice Nurses views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

This is the only positive ( if you can call it that) quote "More powerful still in developing their views was personal experience of the condition. This allowed practice nurses to identify with patients more easily, and to empathise with the symptoms they were describing:

'I suppose I differ in the way that I had a virus, a viral illness many years ago and it was so bad I could barely lift my head, and no-one knew the cause of it, all my blood pattern was normal, I just could not get up... I didn't know what was happening to me and I, I did feel, in the end, is this some form of depression? You know, is it medical? Is it mental? I just did not know. All I know is how I felt, absolutely dreadful. And it didn't matter what the cause for that was to me, it was how I was and that's all that matters, so, I do try to look at it that way.' (PN19)'

Her experience so closely mirrors mine that it is uncanny, except that following my virus, not knowing why I felt that everything requiered the effort it takes to wade through neck high thick mud, I made the mistake of saying to my doctor that I thought I was depressed - that was the start of a downward spiral from which I have never fully surfaced. The antidepressents he prescribed made me suicidal ( a known side effect ) leading to hospitalization for months...

cannot write anymore right now...

Strong stuff, Annette Whittemores Testimony for CFSAC Meeting May 10, 2010

Facebook | Whittemore Peterson Institute: Annette Whittemores Testimony for CFSAC Meeting May 10, 2010

All interested should read the full testimony but I want to highlight this paragraph about our plight due to woeful neglect..

Whittemore Peterson Institute
Testimony of Annette Whittemore
April 25, 2010

" Seek congressionally mandated research dollars that more closely
match the number of individuals impacted by the disease and the
severity of the illness. Millions of Americans are ill with ME and yet
the NIH allocates a mere $1.00 to $4.00 per year per person. The loss
in economic dollars is conservatively estimated to be $9 billion per
year. With that kind of economic loss to our society, why isn’t this
disease funded at the level of hepatitis C which is currently at $93
million a year? Patients diagnosed with ME also suffer from
inflammatory bowel disease, cognitive impairment, fibromyalgia,
anemia, gall bladder disease, chronic Lyme disease, sleep disorders,
chronic pain, depression, hormonal dysregulation, frequent viral
infections, heart disease, and cancer. Yet these sick Americans are
forced to seek unproven medical treatments for symptomatic relief due
to the lack of scientific understanding of the underlying immune
deficiency that is driving this disease. "

Sunday, April 25, 2010

Does a virus cause ME?

Does a virus cause ME?

WPI response to Members of the DSM-5 Task Force

The Whittemore Peterson Institute is deeply concerned that there will
be future complex biological diseases of unknown origin, which could
too easily be ignored as the result of the diagnosis of “complex
somatic disorders”. This would result in serious consequences for
those patients who continue to decline in health without appropriate
medical interventions.

The term CSSD may also serve as a diagnosis to be used by physicians
who currently lack the sophisticated diagnostic tools to describe a
new and emerging illness, causing serious harm to those who are ill.
Two such recent examples of diseases once categorized as somatic
illnesses are multiple sclerosis which was originally called,
“hysterical women’s disease” and gastrointestinal ulcers. Only after
these diseases were pursued by those who believed in their physical
causes with subsequent biological research, were medically effective
treatments made available. Thus creating a somatic diagnosis, when
there is in fact a physical illness, would relegate a population of
patients to many more years of suffering, while basic biological
research funding is denied.

For these reasons, the WPI requests that the APA thoughtfully examine
the purpose and possible unintended consequences for the encompassing
somatic category of illness, Complex Somatic Disorder, and
emphatically requests that the DSM-5 task force reject CSSD, as a
medical or psychiatric diagnosis.

5th Invest in ME International ME/CFS Conference 2010 « LIVING WITH ME

5th Invest in ME International ME/CFS Conference 2010 « LIVING WITH ME

5th Invest in ME International ME/CFS Conference 2010

A New Era in ME/CFS Research

in Westminster, London, on 24th May 2010.
From the beginning Invest in ME have been attempting to show the international dimension to ME and how it requires international cooperation. Support such as this, coming from such respected and long standing organisations is something about which we feel very honoured.

The key to resolving, treating and curing ME/CFS lies in biomedical research.

However, apart from a knowledge of the biomedical research which is ongoing it is necessary for healthcare staff to be aware of the multiple symptoms exhibited by ME patients and of the possible treatments available.

The education of healthcare staff about ME/CFS now needs to break with the past and reflect the newfound knowledge about the pathogenesis of ME/CFS which high quality biomedical research is providing

This promises to be an interesting conference which will use as its theme the education of healthcare staff regarding ME/CFS.

Following the increased interest in biomedical research into ME brought about by the discovery of the XMRV retrovirus by the Whittemore-Peterson institute, the National Cancer Institute and the Cleveland Clinic it is important that healthcare staff as well as patients are acquainted with the current biomedical research and are aware of the consequences of ME.

Important letter re XMRV and possible treatment

A message from Dr. Jamie Deckoff-Jones

I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease. I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT. In that context, I treated patients with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.

When I read the paper in /Science/ about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it. When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians. It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.

Frankly, I didn’t see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail. So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day. It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isn’t happening with respect to figuring out how to help the patients, I don’t think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years. I don’t think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently. HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro. But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.

I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the /Science/ paper. *I would be happy to share with any physician willing to consider treating.

*I certainly don’t expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past. We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. *Always treat the causative agent if you can.* Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.

In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.

I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong. But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down…

I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients. The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let others slay the dragons for us. We have to support them in any way we can. Read: *SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD*. Please tell everyone you know. Pull out all the stops.

Jamie Deckoff-Jones MD
Santa Fe, NM

[Please disseminate.]

Thursday, April 22, 2010

Should I go on strike?

A Fibromyalgia Doctor's Advice for Dealing with the Physical Tasks of Daily Life
by Dr. Mark J Pellegrino, MD*
April 21, 2010

A Fibromyalgia Doctors Advice for Dealing with the Physical Tasks of Daily Life

A specialist in musculoskeletal function and pain (Physiatry), fibromyalgia doctor Mark Pellegrino suggests many “basics” that can help those with FM and other painful conditions to approach daily chores in ways that are kinder to the muscles. An FM patient himself, he knows that ‘every little bit helps.'


Whoever invented fibromyalgia never had to vacuum!

Chores can be a difficult challenge for someone with fibromyalgia. I always ask my patients if their fibromyalgia interferes with activities in the house and they almost always tell me “yes” (even the men!). The bending, reaching, lifting, and pulling required of these tasks causes increased pain and often leads to painful flare-ups. The fibromyalgia homemaker/maintainer is faced with the dilemma of wanting to have a clean home, but not having the physical abilities to complete these tasks without pain. What can you do?

1. Stop doing housework altogether. Yes, just go on strike! See if the work gets done by others. Watch as nothing gets done and your house becomes a health hazard! You can’t stop everything, but daily or weekly tasks can be analyzed to determine if they can be done less frequently. Consider a rotating system where different parts of the house are cleaned on different days and not all at once. Instead of doing one heavy task in one day, spread it out into several mini-tasks over the course of a week.

Your whole house may not be perfectly clean all the time, but parts of your house are perfect every day!

2. Have someone else do it, with you supervising. This is a good way to teach responsibility to your children (or your spouse, the biggest kid of all). The shared housework concept divides the responsibilities among the entire family, and you do the share of tasks that you can comfortably handle.

The heavier tasks (vacuuming, carrying laundry loads) should be delegated to other family members. You supervise - and be sure to look busy at all times!

3. Pay someone else to do it, if you can afford it. Try to have the paid person come weekly or every other week to do the major cleaning, scrubbing and vacuuming. You can do the minor “touch-up” work in between visits. Bribe your kids to work cheap!

4. Modify the way you are doing particular tasks. This allows you to continue doing the homemaking, but do it in a way that is kinder to your muscles. Since homemaking chores are done with your body in unusual and awkward positions that aggravate your fibromyalgia, proper attention must be paid to "fibronomics."

Four Rules of Fibronomics

1. Arms stay home.
2. Unload the back.
3. Support always welcome.
4. Be naturally shifty.

Sunday, April 18, 2010

Time for change

I am going to heed my doctors parting words when I saw her this week, she advised me to rest more and play more....

Friday, April 16, 2010

A Sudden Illness - How My Life Changed, by Laura Hillenbrand

A Sudden Illness - How My Life Changed, by Laura Hillenbrand "I returned home, lay down, and tried to figure out what to do. My psychiatrist had found me to be mentally healthy, but my physicians had concluded that if my symptoms and the results of a few conventional tests didn't fit a disease they knew of, my problem had to be psychological. Rather than admit that they didn't know what I had, they made a diagnosis they weren't qualified to make."

I hope recent advances (XMRV & the Canadian SM neurological classification) make this attitude an historical abberration rather thhan the norm as it is now.

ME/CFS Given Official Recognition by Ontario Government

Amazing news!!!!!!

ME/CFS Given Official Recognition by Ontario Government

ME/CFS Given Official Recognition

ME/CFS Given Official Recognition by Ontario Government!

This means that no one in Ontario who suffers from ME/CFS can ever again be told by a doctor that ME/CFS does not exist. If they do, tell them to look up Diagnostic Code 795. 'Chronic Fatigue Syndrome' has been given the

OHIP Diagnostic Code 795 by the Ontario Medical Association as a Neurological Illness!

Ideally, we wanted the Diagnostic Code to read: 'Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but we had to take what the Ontario Medical Association approved. The most important fact is that 'Chronic Fatigue Syndrome' is now officially recognized as a Neurological Illness in the Province of Ontario, Canada. Perhaps the other Provincial Ministries of Health in Canada will follow?

It has taken many years to get to this point of lobbying, meetings, etc. With the publication of the Canadian Definition, which was initiated by the National ME/FM Action Network, this made this possible. Over the last several years, The Myalgic Encephalomyelitis Association of Ontario has been in meetings with the Ontario Ministry of Health to lobby for a Diagnostic Code and we are so pleased that we now finally have one. Dr. Alison Bested did a fantastic presentation to the Ontario Medical Association. What does it mean to have a (CFS) code"? It means that:

1. NO physician can ever say again that our illness does not exist;

2. All physicians in Ontario will receive a notice from OHIP of our new CFS Diagnostic Code 795 as a Neurological Ilness;

3. The fact that the Ontario Medical Association gave CFS a Diagnostic Code as a Neurological Illness will cause concern to Insurance companies;

4. It will help individuals applying for Ontario Disability Support Program and the Canada Pension Disability Plan;

5. It now makes it possible to collect Statistics in Ontario; and

6. It will hopefully give incentive to the other provinces to follow.

NOTE: The CFS Diagnostic Code is given to someone who is being diagnosed with CFS for the first time. The code is not a time-based fee code. Follow up appointments for any illness (heart disease, MS, CFS, etc. at the present time is usually billed as Supportive Therapy if you take more time than a normal appointment.

Tuesday, April 13, 2010

Whittemore Peterson Institute – Throwing Down The Gauntlet | CFS Un-Tied Blog

Whittemore Peterson Institute – Throwing Down The Gauntlet | CFS Un-Tied Blog

"Whittemore Peterson Institute – Throwing Down The Gauntlet
The rumor mill surrounding the XMRV pseudo-replication studies can finally be put to rest. Any further speculation regarding the cohort used in the original studies, the methodology used in replication attempts, and the efforts made by the WPI to supply reagents and positive patient samples (which went unused) is pointless. The line in the sand has been drawn.

Once again, we need to support the science. Please take a moment and make whatever donation you can to the WPI Institute. "

I truly hope this gets the required response and the XMRV debate moves forward